One Way to Help Family Caregivers: Caregiving Navigators

It generally starts with a crisis: Your parent shows signs of dementia…or is about to be discharged from a serious hospital stay…or requires help with daily activities of living. What do you do? Where do you turn?

It's the little-discussed part of long-term care that leaves many of the nation's 22 million family caregivers for older loved ones bereft and befuddled.

With a nod to The Talking Heads, the Nexus Insights think tank that's focused on the future of aging services calls the problem "navigating the Road to Nowhere" in its new report, "Where Am I, Where Do I Go: The Missing Entry Point to Long-Term Care Solutions for Older Adults and Their Caregivers."

Said Nexus Insights founder Bob Kramer: "We're failing tens of thousands of older adults and their families."

National Alliance for Caregiving (NAC) CEO Jason Resendez, a 2020 Next Avenue Influencer in Aging, added: "More family caregivers are finding it difficult to coordinate care for their loved ones." A 2015 NAC report found that 19% of family caregivers said they felt difficulty coordinating care; that rose to 26% in 2020.

But there's a potential solution gaining traction: a national, independent, trusted hub system of caregiving navigators who would be accessible to everyone and serve as a central doorway to long-term care services and supports.

That's the intriguing idea birthed in the Nexus Insights report.

In addition, the new NaviGuide program from United Church Homes in Ohio (a nonprofit group of faith-inspired senior living communities) is turning this idea into reality for family caregivers, to help them and their loved ones navigate the complex, often siloed world of long-term care.

"The primary challenge that most of my peers and friends and family were experiencing was entering into that phase of their lives when they were suddenly thrust into family caregiving roles and feeling like there's no place to go," said Anne Tumlinson, a Nexus Insights Fellow and a 2018 Next Avenue Influencer In Aging who spawned Nexus' navigator hub proposal.

"In the best-case scenario," she added, "they're getting a hospital discharge planner handing them a long list of organizations who are like, 'Good luck. Here you go.'"

Leslie Best, a senior public health consultant with the National Association of Chronic Disease Directors (NACDD), said: "A lot of times, primary care practitioners' focus is on the patient, as it should be. But they may not be as familiar with resources in the community or even have a recognition of what the caregiver is going through and might need."

The Nexus Insights report focused on the discreet proposal for navigators because addressing all of America's long-term care system problems was too unwieldly and politically charged. There's also little appetite in Washington, D.C. these days to finance, or fix, long-term care.

But the group's Fellows were in "unanimous agreement that [care coordination] was a real problem that no one is really focusing on," said Kramer.

Nexus Insights Fellow Carolyn Pearson, an author of the think tank's caregiving report, noted: "Unfortunately, most people find themselves in these urgent scenarios that are sort of a call for help unexpectedly."

The report doesn't say specifically how a caregiving navigator hub system would work, only that it would be created and supported by both government and the private sector.

"There was broad-based agreement [among the Nexus Fellows] that creating the kind of awareness to make these hubs as visible as your local drugstore or Post Office was going to take a national effort, and a level of funding that was probably going to have to be federally driven," said Kramer.

For "every single family to be creating a long-term care service delivery system is very inefficient from a societal standpoint and an economy standpoint," noted Tumlinson.

The United Kingdom has a kind of caregiving navigator system through its national free Age UK Advice Line, a toll-free number with trained advisors. It's supported by charities.

Think of Nexus Insights' trusted, neutral caregiving navigators as the long-term care equivalent to the U.S. Department of Housing and Urban Development's counseling service on reverse mortgages, home buying, renting and foreclosure avoidance. Or like the Affordable Care Act's Navigators, assisting people shopping for health insurance policies.

The United Church Homes' subscription based NaviGuide program, which launched in March 2022, is giving the idea of caregiving navigators a shot. Its tagline: "A trusted advisor for senior services."

Residents of parts of Ohio, or people with loved ones there, sign up for 24/7 assistance from NaviGuides to find custom-tailored solutions for people needing long-term care and their family caregivers. The NaviGuides, who offer guidance in-person, by phone and by Zoom, are independent; they don't sell assisted living or independent living communities or hospice care.

NaviGuide's 32 service coordinators — often social workers, affordable housing managers and people with experience in senior living who work on an "as needed" basis — connect clients with community resources including home care agencies, meal delivery services and home maintenance pros.

"Listening skills, understanding and being empathetic are imperative," said Terry Spitznagel, senior executive vice president and chief growth officer for United Church Homes.

NaviGuide isn't inexpensive; it costs $249 a month. But United Church Homes also provides NaviGuides to people who can't afford that price. "Right now, we are not turning anyone away," said Spitznagel.

Like the Nexus report, NaviGuides grew out of its creator's personal experience.

"I've been in senior services for three decades, but I just fell apart trying to help my father navigate the aging journey. I couldn't manage it," said Spitznagel. A geriatric care manager charged her $200 for a one-hour assessment and "because of the complexity of [my father's] needs, she felt ill-equipped to really help me and help him," Spitznagel noted.

"In our leadership circle at United Church Homes, we began having conversations about opportunities to take this idea of service coordination and bring it to the consumer," she added. "It's now a passion-driven mission for me."

So far, NaviGuides have engaged with 166 clients. Most called for help when the families were in crisis mode and didn't know what to do.

"People will say, 'I need to find assisted living for mom,'" said Spitznagel. Then, the NaviGuide will typically say, "Do you want mom to have this? Does mom want assisted living?"

Next, said Spitznagel, "We start peeling back the onion and ask: 'What do you really want to have happen?' So, maybe it is assisted living or maybe it's home care or maybe it's neither of those things."

United Church Homes has already been hearing from employers who want to offer its NaviGuide service to employees and from health insurers hoping to provide it to policyholders. The NaviGuide employer rollout is scheduled for 2023; insurers will hop on in 2024. There's also been interest in franchising the service.

Currently, a few types of professionals, advisors and government agencies provide some caregiving navigation services. But, said Kramer, "each has strengths and major weaknesses." The various people and programs include:

Geriatric care managers (sometimes called case managers), licensed professionals who might be social workers or nurses specializing in managing care: "I think they're providing outstanding service if you can afford it," said Kramer.

But geriatric care managers are too expensive for many families. Typical cost: $100 to $250 an hour after an initial assessment of $150 to $750. Medicare doesn't cover their services; neither do most private health plans.

Area Agencies on Aging (AAA), a nationwide network of over 600 local public or private nonprofits that help older adults live independently: They have strong local context, Kramer said, but often can't refer people to specific senior living providers or work with health care providers.

"They're certainly doing important pieces of caregiving coordination," said Pearson. But, she added, "some of them are fabulous and some of them are not." The Nexus Insights report said AAA quality is inconsistent, and agency databases aren't always up to date.

Caregiving coaches, who focus on the caregivers and not the people needing care: Their backgrounds and expertise vary widely. "It's the Wild West out there" when it comes to caregiving coaches, said Tumlinson. Some caregiving coaches volunteer their services through Area Agencies on Aging.

Also, Tumlinson noted, caregiving coaches are not necessarily set up to come to your house, make an assessment of your home and your parent, decide on a care plan identifying services you need and vetting service providers.

Tech-enabled, employer-based, caregiving consultants, offered through companies such as Wellthy, CariLoop, Torchlight and eFamily Care: They can be useful, but are also geared mostly to support caregivers, not those needing the care. "The focus is to enable that adult daughter — whom it most often is — to not miss work or leave her job," said Kramer.

Your employer must offer the service; most businesses — especially small- and medium-sized ones — don't.

Senior care navigational services, such as A Place For Mom and Kendal at Home: They're not objective because they either get paid commissions when placing older adults into communities in their network or arrange for people to age in place using their companies' services.

Support for family caregivers is beginning to arrive in other quarters, too.

For example, the federal RAISE Act Family Caregiving Advisory Council's new report, 2022 National Strategy to Support Family Caregivers, includes 345 commitments from 15 federal agencies, plus related actions for states and communities.

Two other recent reports — Convergence's "Reimagining Care for Older Adults" and the NAC/NACDD's' "Chronic Disease Caregiving Through a Public Health Lens" take a broader look at reforming the long-term care system. But they also call for more support for sudden family caregivers.

The Convergence report says: "Family caregivers are often overstretched, under-supported, and ill-equipped for the tasks they undertake."

It recommends the federal government, states and nongovernment organizations improve and expand matching service registries to help older adults and their families.

The NAC/NACDC report says a root-level issue in long-term care is that "care coordination efforts are an increasing concern for both the family caregiver, as well as the person with complex conditions."

Said NAC's Resendez: "We need to see increased public health action that considers caregivers as a distinct population."

Don't look for a national caregiving hub system anytime soon, said Kramer, Tumlinson and Pearson. But, said Pearson, "the demand signal is clear."

If programs like United Church Homes' NaviGuide are proven financially viable or federal or state governments earmark money for caregiving navigators, you may start seeing these experts pop up around the country.

That might happen through health insurers, employers, nonprofits or perhaps labor unions.

Stuart Butler, Convergence's caregiving project's principal investigator, hopes federal and state governments will commission pilot projects to test out ideas supporting caregivers. "They can try these things and inform others so they can be replicated," he said.

"There are real opportunities to move forward on this," said Kramer. "But it's going to take keeping the issue in the limelight and building momentum and seizing opportunities."

It may also require more people finding themselves thrust into becoming family caregivers or needing to coordinate care.

Said Tumlinson: "You have to go through it and then be stunned. Then you say, 'Why is this not being fixed? How is this possible?'"

Richard Eisenberg is the former Senior Web Editor of the Money & Security and Work & Purpose channels of Next Avenue and former Managing Editor for the site. He is the author of "How to Avoid a Mid-Life Financial Crisis" and has been a personal finance editor at Money, Yahoo, Good Housekeeping, and CBS MoneyWatch. Read More